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So, a little about my husband's family. He is the black sheep of the family because his parents had him very late in life. He has three living siblings. One is on disability, and is the very nice one, but I understand why she cannot help. Her home of thirty years just burned down and she had to move to Oklahoma with her daughter. She has been welcoming and kind, but I understand why she cannot really help as she is nearly 80.



His other sister lives in a different state and is how can I put this just not real nice? His brother lives here and is the "accomplished one" of the family having had a master's degree and retiring about five years ago. He has savings. He won't have anything to do with Mark.



His nephew is down here helping me but reminds me everyday what he is sacrificing even though I am paying him monthly and that he lost his job (he works at Dominos) because of me. I remind him that I will be moving from TX to NM and that I appreciate him and he gets mad saying words are meaningless and gets angry that I can't pay him more money (I have to pay rent and bills to)



The family looks down on me even though I have a doctorate degree (yes I am not 40 and have a doctorate degree) and we are middle class. They have not even texted Mark to see how he is even though he literally lost his leg less than a week ago.

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There are five stages of PKD, just like regular renal disease. He fluctuates between stage 4 and 5, but my guess is he would be on the high end of 4 since the he is on hemodialysis and the did say he would need to be on hemodialysis for the rest of his life. I really doubt he would be a qualify for a kidney transplant at this point considering his other health problems. His GFR is on the low side, 19 last time they checked which also explains why he has problems with anemia.
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Re health status. People can recover from amputation. Some do very well, despite the pain & trauma, do the huge amount of required physio & mental work to adjust to their new life. Obtain & adjust to a prosthetic limb.

However, I believe being realistic is important.

An accident victim varies from a person with advanced illness.

I have met 2 people who could not do the required rehab & therfore could not progress to using a prothetic limb. One was young, morbidly obesese, with some sort of connective tissue disease. The other middle aged, with severe & fluctuating mental illness. Both became wheelchair dependant after amputation. Neither had upper body strength for independant transfers & required assisted care living.

I do not know what led to your husband needing an amputation. Is diabetes a factor?
Dialysis was mentioned. Is this temporary or is there kidney disease, or renal failure?

Poor kidney function causes confusion/delerium. ICU can cause delerium. Pain can cause delerium. Paid meds can cause delerium.

Many many reasons your husband may not be his usual rational self.

I get not having POA arranged before hand, if you were both well & clear thinking.

I believe you will be able to make emergency medical decisions for your husband (if he cannot) as legal spouse & next of kin. But having POA would be clearer. An Attorney can advice you if he could arrange a legal POA at present.

Even if not completely orientated, if he can communicate clearly he wants YOU to act for him, this may suffice. He must be able to understand the question & communicate his answer. (However, not if he is resistive or unwilling)

Has your husband completed an Advance Care Plan? (Also known as DNR). Specifying what treatments he would or would not want? Some people do not want painful, burdonsome or futile treatments while others are 'life at all cost'.

I reason this is confronting but if you know his wishes it will help you decide if you have to.
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DoggieMom86 Feb 27, 2024
Mark has Polycystic kidney disease. He has had declining function for years but it seems he is in Stage IV. He does not have diabetes. The leg was amputated because of severe bone infection.

He also has neuropathy and COPD. His lungs have radiation scarring from cancer treatment.
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Re the nephew. Doesn’t sound like it is working out.

Why hire an out of town nephew instead of a local person?

Be honest with yourself. Could it tied up with feelings that his family SHOULD be helping?

Or do you feel it ok to have family help but not a 'stranger'? I may be wrong.. these are common reactions I hear from others. No judgement. Just asking in case it gives you something to think on.

"I agreed to pay him to help me get to work"

What are the alternative ways to get to work? Public transport? Uber/Taxi?

You have 3 months on your contract left, yes? Could you rent a room (on a short-term let) closer to your workplace?

If the nephew quits, you would find an alternative. What would that be?
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DoggieMom86 Feb 27, 2024
I do do Ubers some times but at 40 bucks between here and home it gets a tad pricey
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I am sorry your husband is is the ICU, it does sound like he needs to be there.

It is sad his family have not called to check in. Could that be a misunderstanding? Could they be awaiting updates from you?

When someone is very unwell, unable to talk or has confusion, the spouse or NOK may send a short group txt update eg: "X is still in ICU, his condition is stable".

This can be sent to the top/elder members of each household, then they pass it down their 'branch'. I think it may even be called a Message Tree.

Have you felt inclined or comfortable to do this?
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DoggieMom86 Feb 27, 2024
Yes I have kept his family informed they will txt his nephew but not me.
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To answer your question, I do not have POA because until he was in the hospital, he was competent and mentally he was totally fine. He made the decision to block me out of medical decisions after he had to have the amputation and even before that happened it was heck trying to get answers out of any doctor. One day they told me it looked like cancer then a week later "Oops sorry, it was not cancer." I have tried to discuss with several doctors that his mental state is not "all there" but the doctors say since he can pay attention for the ten to fifteen minutes they pop in that he is fine. Is it pain meds? I hope that is all it is fogging his brain, but I am concerned that he doesn't remember much at all.

Before the surgery, I told him I had visited and he said, "What, you did, when?" He only remembers events right before he was taken by ambulance to the hospital. I did not think I would need a POA when someone was coherent and could make their own decisions. Until he had been admitted, he had three different tests for dementia and did good (for licensed psychologists) on each one. I knew he was with it because he knew debit card #s, what bills we owed, all of the normal stuff. I think he is angry at me right now and I can understand from his point of view why he is.
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As of now, Mark is still in the ICU. I know they have to watch him closely because of dialysis and he has had low blood pressure, especially after a dialysis session. Mark is making things rather difficult for me at the moment because he told the nurses and doctors to not share medical information. Maybe I can get him to change his mind, I will try. Mark's mind is not "all there" at the moment and all I know for sure is he is not allergic to the antibiotics so it may be related to being in the ICU for starting in March, two months.

Why I am waiting until May is that my contract for work ends and my lease on my home ends. I am a teacher so I will receive my summer pay which will help with the move. Robert is Mark's sister's son (the nephew). He lives ten hours away and I agreed to pay him to help me get to work and for some of his living expenses at home while he stays to help. Robert's 76 year old father is the one (yes, his father still works repairing AC!) who mainly pays the bills. Robert had a Door Dash job and he complained he lost it. I told him he could do that in my area and make about ten times more, but oh well. I am sure there are many places he can get a job after I move.

I don't really expect his family to chip in at all because they never have, but I would expect they would at least call to check in on him. Mark's family is huge, he is from a line of six children. He and three other siblings are the only ones still living.
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AlvaDeer Feb 27, 2024
I think if you are moving your husband AWAY from the support of his family that is right now a huge mistake. He is not letting you be told his information and the hospital isn't bright enough to recognize he is confused? That isn't good. What sort of POA or documents do you have for advance directive. Because this is NOT GOOD, that he would tell him that for starters and that they would honor it for finish. This is sounding more and more like a catastophic thing in the making and as to moves, I would go REAL SLOW on that one.
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Lots of things seem to have snowballed together. That happens, especially to me when I get overwhelmed.

I am sorry your husband is suffering with his health.

A move closer to your family may offer more support in the future - but you need support now.

So forget his family. No help.
The sulky pizza nephew - forget him too. Not working out.. Look for better support.

Is your husband still in the hospital now?

An amputation is a serious situaion. His medical team will hopefully have a multi-displinary approach - Physio, OT for equipment (inpatient & once home) + learning new ways of doing things. Is there a Chaplain or similar emptional support for the BOTH of you? Or a Social Worker to assist with getting home health services/paid aides set up?

Do you have a safe, comfortable room or space to unwind in?
Self-care still needs a better term I think.. but it is important.
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Hi DoggieMom

There are many complaints of family members on this site, so know that you aren’t alone.

The nephew is hired to help his uncle, right? He isn’t helping you. Change that thought in your mind.
If the nephew is down to Texas, whose child is he?
How old is the nephew? The ages of your in-laws and DH makes me think this nephew must be one of the siblings grandson??

Usually when hiring from an agency, the rates are one thing no one is confused about. Very expensive and contractual.

When family hires are involved, there are often issues because there is often no contract etc. The duties and hours are unknown in the beginning as the situation is new to all concerned. Helping out a few days morphs into weeks, months and sometimes years. The family members are not experienced in caregiving and often work too many hours without breaks. You mentioned you are paying him monthly so perhaps there are no defined hours where he is not on call. It is easy to become overwhelmed. That’s true for you as well.

Remember that caregiving has to work for all parties involved. Please make sure you are keeping a record of any money paid in case it becomes an issue with Medicaid. If this nephew is all the help you can afford and DH is going to continue to need help, facility care may be in his future.

Let the nephew know what the job is and what it pays without apology. If he doesn’t want the job, he needs to say so.

And DoggieMom, how is your husband doing? What does he want to do regarding moving to NM or staying in Tx now that he has had a little time to recover? If he is competent, let him deal with his nephew.

As always, do not quit your job, do not bankrupt yourself emotionally, financially or physically.

You may have just needed to vent, that’s okay. That may be what the nephew is needing as well when he complains to you.
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Doggie,

Thanks for clarifying what you meant.

You sound overwhelmed. Take care of yourself.

Take one step forward each day and eventually you will reach your goal.

Try to focus on what is best for you. Let everyone else do what they feel is best.

Accept that no one gets everything they want in life. All of us have had family issues. Sometimes we are able to resolve things and other times we can’t.

Talk to someone if you need to unload your misery and get feedback. I found therapy to be extremely useful when I felt overwhelmed.
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I see I made a mess of this post. First of all, let me apologize about the messiness of my post. My Asperger’s tends to get worse when I am highly stressed. My husband’s nephew is here helping me while I finish working until May because I don’t drive.Mark, my husband, has been in the ICU. I didn’t mean that black sheep are always the youngest,, only that Mark’s two living siblings view him that way.

I am proud of my degree but no I don’t think it makes me better than everyone else. I meant that Mark’s brother has stated he looks down on me even though I have the same if not more college than he does. I will grant his brother 40+ years working experience, but I am only 37. I don’t pretend to understand all the family dynamics but am just frustrated that his family, which lives about an hour away, won’t text him to see how he is.

Why am I moving? I need to be near my family. I admit to having mental problems. Mark has his health to worry about and he was my rock. I understand he needs to focus on his growing needs, but mentally, I need family around to help steady me. It is too large a city to really “go it alone”.
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AlvaDeer Feb 26, 2024
Wait! So you are moving AWAY FROM YOUR HUSBAND?
Is that what you are telling us?
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I posted earlier but I want to point something out that I feel is important for you to realize.

Please try not to generalize about these circumstances. Your post comes off as being a person who is fed up with caregiving, which I totally understand, but it seems like you are focusing on things that are irrelevant.

Of course, I would never pretend to know your family better than you do. You know the facts and we only know a smidgen of details.

I had my youngest daughter at age 40, not by choice, but because I struggled for years and years with infertility.

My youngest daughter is not considered to be the ‘black sheep’ in our family because we had her later in life. My oldest brother, mom’s first born was the black sheep in our family. So it can be the oldest, middle or youngest child that is the black sheep.

So, you have a doctorate? Fantastic! That’s wonderful but you don’t need a doctorate degree to make rational decisions, right? No one should be acting as if they are better than anyone else.

Your comment makes me wonder if you flaunt your degree in front of others and it turns them off.

My youngest brother has a doctorate degree but he rarely mentions this fact to anyone else.

My brother values others in our family who don’t have doctorate degrees. He never feels like his advanced education is more important than the rest of us with a bachelor degree or a masters degree.

I do hope that you can either find a way to be harmonious with your family or that you can move forward on your own.
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My husband had a liver transplant in 2022 and 3 of his own children didn't even call to see how he was doing. Forget about family helping you, in fact, forget about them altogether. Hire help and if they don't work out or disrespect you, fire them w/o a second thought. Too bad you ruined your nephews "career" at pizza delivery 🙄. Fire his sorry self and replace him with a real caregiver who values the job.

Do what's best for you and Mark right now and blow raspberries at everyone else. And tell Mark if he doesn't lift the restrictions he's imposed against you getting info about his health, you will stop coming by entirely.

Best of luck to you.
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DM, I'm sorry that your husband Mark is in such a bad shape.

I'm curious why you expect his siblings to help out substantially with his care. That is certainly not the norm or expectation where I live.
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I have to agree, what are you really expecting his siblings to do? As far as the nephew...fire him. Find a new helper. You will have more peace when you stop expecting others to step up.
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I tend to agree with Alva. Why waste your time and energy on things that you have no control over?

Focus your thoughts on moving forward with changes that will improve your life. Forget about what others think, say or do.
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You know what?
They are over it.
Apparently they don't care.
If they do, they are p-poor at expressing it.

I couldn't care less what this family thinks or says or does. It's a waste of time.
They are an exercise in uselessness if this is the best they can do.

I think that you need to know that YOU, as his gentleman's wife, who are attempting to do ongoing care in the home, are ALL THERE IS.
You need to face that it may be time that you cannot do this alone.
Stop paying family and start paying real help or face that your hubby needs to go into care.
Which, if I am not mistaken is where he is now.

There isn't anyone else. Any help you get from them, look upon it with gratitude. They aren't into this. They don't care any more. He's of no use to them now.

You can't change other people.
Stop worrying about them and what they think and what they say and learn to hang up the phone quickly.
As to their looking "down on you", that's just childish thinking. What in the world do you care WHAT they think of you!!??!!
This isn't a matter of one-upsmanship. This is a gentleman who is dreadfully ill, likely dying slowly. This is where the rubber hits the curb.

Stop worrying about this ridiculous family. Make them as absent from your thinking as they are from everything else.
AND stop depending upon them.
They aren't there for either one of you if they are as described.
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From the OP’s profile:

“I am caring for my husband Mark, who is 61 years old with age-related decline, anxiety, hearing loss, lung disease, and mobility problems.”

DoggieMom, it seems like you are moving from TX to NM? Is the nephew unable to help you until then? As horrible as your and your husband’s situation is, I am very concerned about young people in general who get trapped into low income caregiving situations (we hear from a lot of them on this site), so I kind of don’t blame him for being antsy. Although, of course he shouldn’t be rude about it.

What are your plans for your husband’s care in NM?

What a terribly stressful situation for you and Mark.
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NeedHelpWithMom Feb 26, 2024
Usually do read the profile. Didn’t this time. Thanks for sharing her background info.
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I think your anxiety is so high because of what your going through, your not Making alot of sense. Who are you caregiving?
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Southernwaver Feb 26, 2024
I wonder if she is so exhausted she can’t string a sentence together?
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Doggie,

I am a bit confused by your posting. Is this just a post to vent or do you have a specific question for us?

Whatever it is, I hope that this situation will work out as best as it possibly can.

Wishing you well.
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Who is Mark?
What help are they providing?
Who is your nephew providing help for?
How old is everybody?
What is going on?

We can't provide any advice because this post is all over the place.
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NeedHelpWithMom Feb 26, 2024
I’m confused about this post too.
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